Our New Normal [s] » Our little family's realization, that there is no normal

So, here it is…

I wanted to let you guys in on something that has pretty much rocked our world in the last 3 weeks because we could sure use your prayers, and I know you’ll probably be hearing things, so I’d rather you hear it from me directly.

Before I say anything, I also want you to know, this is the doctor’s diagnosis only- not God’s promise for her, so to us, these are just facts- and we are believing for God to bring about his promise for healing to her body. We don’t know in what way God will bring the healing, but we know he will. And we have already seen her defeat the odds in many details.

Vivia has just been diagnosed with a rare, serious disease called Dermato-myositis that came out of nowhere. IT IS NOT CONTAGIOUS, it is genetic. She has had these strange scales on her knuckles for almost 2 years now, we brought it to our pediatritian’s attention a LONG time ago, and we also noticed a reaction to being out in the sun- like hives, almost- and long story short, after a long journey of misdiagnosis, and dermatologist visits, have found out that it is not just a skin thing.
It’s her immune system attacking her body. And it wont just stop at her skin. If not stopped, it will move into her muscle, and could even possibly move into her digestive system and other organs.
It is an autoimmune disease that is very serious, and if it goes untreated, can lead to fatality.
The good news is that the treatment, even though very aggressive, is almost 100% effective in getting these kids into remission. It’s kind of like a “shock and awe” approach- bombard it and weaken its effects right away, and then a sustained attack over time. If her inflammation goes down quickly, she may not need the length of treatment they are initially saying she will. There’s so little known about this, but we are really blessed that we detected it so early on. Some parents find out about it because their child wakes up one morning and can’t move- with no prior symptoms.

If you want to find out about it more, you can go here: http://curejm.com/
This is the site I have found with the most up-to-date information. There is also a short video that does an excellent job of explaining what we are facing. You can also view it on my blog here:

If all goes as planned, we will be checking her in to Shands Children’s Hospital in Gainsville on Tuesday, March 1 for 3 days of aggressive IV treatment, which will be followed up by up to 2 years of oral steroids, and methotrexate which is a very harsh med.
I tell you all of this too, because a side effect of these types of meds can cause pretty obvious changes in her appearance, and really obvious mood swings (another way of saying that these kids can get really mean). You may want to prepare your kids/talk to them about this when and if we do start to see these side effects happen. I am not sure when to begin to look for them.

When she is out of the hospital for the initial transfusion, she will have to go back at least once a month for at least 6 months for outpatient transfusions.

This is all pretty sudden, and overwhelming, but Vivia is full of life and a Victorious one, as her name claims. She is an amazing little conqueror. And if all goes well, this can be behind us pretty quick as long as there are no complications. As I type this, she’s sitting on the floor behind me, making up a song about the animals and the letters of the alphabet- and singing with a happy heart at the top of her lungs! This will not crush her. Of that, we are confident.

Specific Prayer Requests:
1. Vivia’s Miraculous Health and full recovery from this- quickly
2. Strength for our family as our life is drastically going to have to change
3. Miraculous financial provision bc this has already gotten very expensive
4. Emotional/Spiritual health for Vivia and the rest of our family
5. That she will defeat the odds and not experience all these harsh side effects they are saying she will.

I’m sure I will have more prayer requests as time goes by, but I think that’s it for now. And please feel free to email me back if you have any questions.

I think it is important that the kids interact with her the same way they normally would- she’s not made of glass or anything, she may have days where she’s too weak to participate in some things, and she pretty much can’t be in the sun- at all (this is a trigger for her disease to flare up), but she is the same Vivia she always was. And as far as she’s concerned, so far, she thinks this is all about “getting rid of her rashes” because she hates them.

So, if the kids start throwing words around like “disease” or “sick” she won’t really know what they are talking about. So, please use caution in how you talk about it with your kids, too. We are very careful with our words, especially around her, bc we want to always speak life. And in no way, with our lips, be in agreement with this thing, spiritually. There may come a time that we need to discuss the whole picture with her, but hopefully, that day will we will be speaking about it in past-tense- when this is all over.

February 23, 2011 - 3:16 pm

Megan - Thanks for a full update. Its good to know how to specifically pray!! Lots of love and hugs~

February 23, 2011 - 3:28 pm

Laynie - Freedom – I am praying! I’ve had the privilege of meeting Vivia once and she is a bright, charming, young lady. I also speak LIFE. xx

June 7, 2011 - 1:31 pm

Carla Nason - Praying for you all! Shawn and Kayla and I love you dearly and we know that God’s plans are higher than ours. One word of awareness…do NOT claim the “rashes.” Don’t speak “Vivi’s rashes” or let her say “my rashes.” Change your verbage by saying “The rashes” or “those rashes.” A wise friend of mine once corrected me because I used to say “‘my allergies’ are bothering me.” He told me, “Those allergies don’t belong to you so don’t claim them. By putting “My” in front of that sentence you are claiming them as yours.” I never thought of it that way. So ever since then, I don’t claim ailments and attacks. I know that allergies are a far cry from this attack but the principle is still the same. Love and prayers to all of you!!!

June 7, 2011 - 2:22 pm

Eduardo - Vivi, we think of you every day and we know that you will recover quickly. You are blessed with a great family and friends that will support you all the way. Stay strong sweetie!

June 7, 2011 - 2:36 pm

freedomg12 - Thanks @Carla, that is a great truth! We also believe in not *claiming any part of this with our words, and I thank you for the reminder!

June 7, 2011 - 4:35 pm

Jenna - Praying for you guys.

June 7, 2011 - 7:04 pm

Brian - thanks for sharing your journey with us. we will stand with you to see her healed.

June 7, 2011 - 8:54 pm

The bourgoins - Sign us up for prayer chain!

June 8, 2011 - 12:51 am

Andrea Myers - You are ALL near and dear to my heart. I think of sweet Viv every single day and lift her up to the One who can heal her. I pray this brings your family closer to eachother as well as to our Maker. My parents are also in prayer. Thank you for sharing and I will read everything you post. Love you Free!!!!!

February 28, 2012 - 6:22 pm

Kat Hayduk - Glad you have found the video a good resource to share- my partner and I did it. We heart Cure JM. Please know that most kids achieve remission, including our perfectly healthy nine year who was diagnosed 5 years ago and has been off all meds for three years now. Aside from occasional redness on his skin after a hot bath or too much time at the beach (we are just extra diligent about sunscreen and hats, but don’t keep him out of the sun), he’s perfectly normal and healthy. We just visit his doctors once a year now. I know some other folks aren’t so lucky, but the odds are way on your side- especially since it’s mainly isolated to her skin. Hang in there, but don’t let it define you (or her). I was obsessive about it for the first while and that’s normal, but I wish I spent more time looking at the best case scenarios and not the worst. And, do everything in your power to go to a Cure JM event sometime- they’re awesome! Also, our son is now really into science (and microbiology in particular) and I think that’s because of all his experiences with JDM. Hugs, Kat

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